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Barriers to sharing and linking information means less effective care for children and parents

Disparate systems and a fear about what information can be shared, which has been heightened by the introduction of GDPR, means care for children in their first three years is not as good as it could be.

MPs on the Health and Social Care Committee today released a report highlighting the importance of the first 1000 days of a child’s life, from conception to age 2. It highlights a study that found that people who experience at least four adverse childhood experiences during this time were more likely to get heart disease, cancer and many mental health problems. They were also thirty times more likely to have attempted suicide.

As such, the Committee is asking the Government to produce a long-term cross-Government strategy for the first 1000 days of life, with the aim of improving school readiness, as well as reducing infant mortality and child poverty.

However, an area that has been highlighted by the Committee as problematic for effective care and needs better guidance and support, is how professionals, local authorities and care providers are facing barriers to sharing and linking information.

The report also highlights how the introduction of GDPR has created further confusion and anxiety for caregivers over what can be shared and what can’t.

Dr Paul Williams MP, who led the Committee for this inquiry, says:

"Quite simply, I want this country to be the most supportive and caring place in the world that a child could be born into."

“There is a crisis in children's mental health in this country. Government must now show inspiring leadership to help children get the best possible start in life. If our country is serious about prevention and reducing health inequalities then we must make massive investments and drive coordinated action right at the start of life."

The barriers

The report notes that joined-up care and support for children, parents and families has been inhabited by “barriers to sharing and linking information”.

It adds that problems - both real and perceived - with sharing and linking information across professional and service boundaries appear to be ubiquitous.

Evidence from the Liverpool First 1001 Critical Days Strategic Group provides an account of the problems, which are common among other areas. They stated:

“A range of data systems are in use across sectors and organisations with limited if any, connectivity across. This is also coupled with sensitivities about information sharing from frontline staff, even in the presence of information sharing agreements.

“The limited connectivity across organisations also means opportunities for data linkage are at best, very limited.”

The Committee notes that one major barrier to sharing information is a fear on the part of professionals about what information they can share with whom and in what way. Specifically, they fear sharing information illegally and do not want to fall short of professional codes of conduct.

Interestingly, a focus group highlighted to the Committee that the introduction of the new EU General Data Protection Regulation (GDPR) has “created more uncertainty”.

Systems

Unsurprisingly, the Committee also found that separate data systems between local public services, as well as voluntary sectors services that support them, present a physical barrier to providing integrated care for children, parents and families. For example, the Committee saw examples where health visitors, GPs and social workers had separate case management systems.

Some areas, including Blackpool and Liverpool, are undertaking work to create town-wide systems to make it easier for local services to share and compare data.

Public Health England said that the new national standards covering the electronic sharing of information are dire to be published this year, as part of the Digital Child Health Programme, which wills et out mechanisms for transferring data electronically between clinical settings.

The report notes:

“The inability to link data has inhibited the ability of those working at both a local and national level to gain a comprehensive picture of provision during the first 1000 days of life, including how public money is spent, how services are used and the effect of service provision on outcomes.

“Public Health England confirm that health datasets include unique identifiers which means that they can be linked to other health datasets as well as datasets covering other public services.

“For example, PHE suggest that linking the Community Services Dataset to the National Pupil Database is possible and would provide an opportunity for “educational progress to be baselined from age two to two and half years rather than at school entry.”

The report concludes that as part of a national strategy, the government should provide guidance and support to local areas about how services for children, parents and families can effectively share information. This guidance must also explain clearly what is permissible to share, with whose and in what way.